Share Your Tips on Talking to Doctors / Psychiatrists

I’m working on my first ebook. It’s going to be about building a relationship with your doctor. Essentially, it’s about getting what you, the patient, need from the person behind the prescription pad.

Why Write About Doctor-Patient Communication?

I’m writing this book because of the plethora of mental health questions I get on the subject. I believe people with bipolar disorder, depression and other mental illnesses don’t get optimal care due to dysfunctional medical relationships. This is not necessarily the fault of the doctor / psychiatrist or the patient. It just means the relationship isn’t as good as it could be. Think of it like couples counseling between doctor and patient.

So, I have some questions for you; please weigh in. (Oh, you don’t have to answer all the questions. Any that interest you would be great though.)

What Do You Wish You Had Asked Your Doctor When You Were Diagnosed?

Pre-diagnosis, before you understood your mental illness, what do you wish you had known? What do you wish you had asked your doctor about your diagnosis? What do you wish you had said to your family doctor or psychiatrist specifically?

What Do You Wish You Had Asked About Your First Treatment?

What do you wish you had known about treatment? What do you wish your doctor had told you? What do you think new patients should know? Who do you think should handle treatment?

What Do You Think Patients Should Ask About Treatments / Side Effects?

When you get a new treatment or change your treatment, what do you ask your doctor? What should people ask? What do you want to ask but always forget? What do you want to ask but are too afraid too? What do you wish your doctor would tell you?

What Should You Tell Your Doctor / Psychiatrist?

What is most important for a doctor / psychiatrist to know? What do you always tell your doctor? What are you too scared to tell your doctor? Is there something you think you shouldn’t tell a doctor/psychiatrist?

What Makes a Relationship with a Doctor / Psychiatrist Work?

After dealing with doctors for over a decade, I have my own ways of making the psychiatrist-patient relationship work. What are your tips for patients? What works with a doctor and what doesn’t?

What Other Questions Would You Like to See Addressed?

What else do you think I should put in the book?

Why Am I Asking?

I’m asking because I would like to represent the real voice of the real patient as much as possible. I know what I want to write and why, but I’d like to hear varying opinions. Every one of you is different and every one of you has a different insight to share. Whether you love or hate doctors, this book is designed to make your relationship with them work better for you, and maybe for them as well.

I look forward to hearing your thoughts.

Note

By responding here you agree to be quoted in the book should I choose to do so. I’ll only use aliases to identify people so you don’t have to worry about people identifying you. If you don’t want to be quoted, that’s no problem, just say so.

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22 Comments

When I was first diagnosed I took all the medications they told me regardless of my research on symptoms they would cause. I wish I had asked what my other options would work best before taking medications that caused weight gain and put me into further depression.
With my 3rd physiatrist I wish I had asked far more questions and demanded him treat me rather than pushing more medications at me. That my MD listened when and referred me to a new doctor that would listen to me and take my concerns serious and was available via telephone when I developed the serious rash cause by ramping up too quickly on lamictal. I now have a new psychiatrist and active family doctor that take part in my circle of care. My biggest down fall until now was not being honest, not keeping a mood diary to show that the medications were not right. I asked my new psych if I committed myself 100% if he would commit to helping to the best of his ability, as I know doctors are busy, I needed to know that he would participate actively in my circle of care with therapist and MD. For me the most important thing I could tell the doctor was about my constant suicidal ideation, and that I felt the meds I was on just weren’t the right ones in controlling my symptoms. The best thing I learned from my new doctor was that it was biological condition, that I didn’t have a flawed personality, extremely important for me to know.

I made the mistake when I was first diagnosed with depression to not question the doctor, of course I was only 12 at the time. This was a neurologist who insisted it was my thyroid even though tests came back normal. He just kept increasing the dose when it didn’t work. After passing out, I went to my GP and she did not believe the dosage of thyroid meds he had me on, and told me to stop taking them immedieatly.
From then on I lost trust in doctors. I did not mention my depression again until I was pregnant and lost my sister to suicide. I then told my obgyn who put me on something that just turned me into a robot. It was until 6 years later that I finally sought help again. I went to a GP who immedietly got me in to see a p-doc. My p-doc was good about explaining everything to me, and took the time to listen, and gets on me when she knows I am not telling her everything, and shows genuine concern. It took a long time to find a doctor that I trusted and have been able to work with her to try and get my meds straight.
She always wants to know about side effects and will make adjustments to try and minimize them. They really want to know how you are doing, and it is best to write it down to remember.
So while not a direct answer to your questions, I think it is most important to find a doctor that you can trust in order to build a strong doctor-patient relationship.

i need that energy level in hyper stage…it should b burn out….if so then many thngs can change..creativity is a part of my life..i dont like to hide it thats all..
when people hear this they may have several thoughts in thier mind..but i know that what i am thinking of this….two stages r there in my life depression nd mania…and i like mania mood…bcoz something what i can do is in that stage…but the external environment dont like it…i need a solution…….

1. When first meeting with your P-Doc, you need identify their propensities for bias towards gender, socio-economic standing, religious bearing, and for illnesses. And you need also know whether there is a prejudice of diagnoses given based upon such demographics, fads, or insurance coverage. When the P-Doc near out the gate has you diagnosed…beware. Even if you come new to them previously diagnosed, a good P-Doc would approach you with an open mind and clean slate without presumptions and assumptions becoming your standard for your diagnosis and subsequent treatment. After the standard history taking and MSE, any plausible diagnosis should stand as one(s) to be “Ruled Put” just as in scientific method of disproving something to ascertain its validity. If your P-Doc cannot R/O the tentative diagnosis, then it reasonably stands worth affording more time and attention and appropriate treatment. And when you have been officially given a diagnosis, challenge your P-Doc to present those objective findings they gathered and used to reach their finding. IT IS IMPERATIVE THAT YOU IDENTIFY THAT YOUR DIAGNOSIS IS FOUNDED ON STRICTLY OBJECTIVE MERIT AND NOT THE SUBJECTIVE PITFALLS HOSTED OF YOUR P-Doc. I myself went misdiagnosed for over ten years and subjected to ineffectual treatment that left me worse off and frustrated and lacking faith in the skills and motivations of the profession. The consequent discord lent to subjective personality labeling and damaging treatment treatment abandoned altogether for what I truly did suffer from. For what might have been treatable and recovable fated my illnesses to chronicity for their lack of timely address and treatment rendered. Know your medical rights! In my case both misdiagnosis was intentional and later made known to me “unofficially” due to the politics of the institution I was diagnosed within and misdiagnosis continued out of physician incompetence/neglect but when finally transferred into the care of a colleague within another institution, misdiagnosis discovered but told unofficially that it would take too much administrative work, staff time, and cost to change things now–the treatment was close enough for what I really suffer from! My moral to this: question the merits and motives of where and by whom you receive your diagnosis and seek a second opinion especially if treatment does not find you no better and problem(s) persist unchanged or worse.

Almost too painful a subject to talk about. A passage from a book I read “Women on Edge of Time” by Marge Piercy conveys some of what I felt:
“The first time she’d been committed, when she believed herself truly sick, she had expected treatment. A kindly gray doctor, a sort of Marcus Welby of the mind, would sit behind a desk asking her questions in a learned but soothing voice, explaining to her exactly how she had gone wrong. She would weep and understand. Confessional. Priests that healed. But all the doctor asked in the five minutes granted her had been the name of the President the date, why she thought she was there. Then he had told her to count backward from one hundred by sevens.”

The following are not in direct answer to your questions, but they are three key for new patients (which I’m sure you’ve thought of–just emphasizing). They are tips I’ve seen friends not take to heart, to their loss. These seems to fall within your general topic, so I hope you might find it useful.

1. Do not go to a GP. They are not experts in this field. You need an expert.

2. Find a doc you are comfortable with. This is a frustrating task, but necessary. Get referrals from folks you know. If at any point in the doc-patient relationship things don’t feel right, or if you feel like your doc is not listening to you, express your concerns, and if nothing changes–find someone else. It is your life, it is your body, it is your brain, it is your fight. The psychiatrist is your expert and adviser, but all decisions are yours to own.

3. Keep a running list of your symptoms, questions, and concerns whenever they come to mind, so you will not forget to mention anything when you see your doc. Your visit is short, so be brief but thorough; get all your questions answered. If your doc will not listen, find someone else. You cannot be passive in this process–you and your doc are partners.

I do say here, and in the book, people should get a psychiatrist. I’m very clear about it. But I think it’s a tricky subject for a whole host of reasons. The person may not have access to one due to availability or cost. And GPs do prescribe the vast majority of psych meds out of default. I, too, would like everyone to have a psychiatrist I’m just not sure how reasonable an expectation that is to have.

Your other suggestions are good too. It’s the experienced patient who knows to write things down before the appointment. Which, of course, is ironic as new patients are the ones that need to do that the most.

Hopefully new patients will buy my book and be able to put into practice what some of us more experienced folks have learned is important.

As a physician, the most important advice I would give is to make a short list of your questions and concerns before you go to your appointment. Even when there is not a critical diagnosis, patients tend to be intimidated by the office surroundings, if not by the physician.
If your doctor seems too hurried or harried to answer, ask them to slow down.
If you don’t understand what is being said, do not hesitate to say so.
If all else fails, call as soon as you can to come back in tiio speak with the physician or the nurse. You probably won’t be charged to speak with the nurse.
(@lease excuse typos, using my Blackberry)

These are all difficult questions. I was diagnosed a long time ago, and some of it is hard to remember.

When I was first diagnosed –

I had gone in to mental health services in college because I had suddenly experienced great anger to the point I wanted to hurt someone (a particular someone). I never minded my suicidal feelings… I had taken it for granted as a young adult that I would die before I was 30 anyway. But feeling that sort of intense uncontrolled anger toward someone else was totally unlike me and scared me. They had me see a psychiatrist at the school who spent, as I recall, almost the entire morning talking to me.

I very much regret not getting the details of my diagnosis. What did it mean to have bi-polar? Was there more than one classification and if so, which applied to me (to this day I don’t know what is written down, though I can guess). What is the outlook? Can it be cured? I didn’t think anger was part of bi-polar… why was I being given this diagnosis? These are all things I should have asked. But given my state at the time, I’m not sure I would have received honest answers even had I thought to ask.

I’ve never trusted any therapist or shrink enough to tell them everything, and I’ve had enough bad experiences with doctors when I have opened up more that I don’t really trust them enough for them to give me good treatment. I still don’t know how to resolve that.

About my first treatment –

I wish there had been an option other than medication. They wanted to put me on lithium at the time. I knew enough, just enough, about bi-polar for this to scare me, and based on my worries, they started me on depakote (sp?) instead. But I had hallucinations on it, and was relatively quickly switched to lithium even with my misgivings about it.

I wish they had told me I might lose my hair. honestly. hair matters to a man and it still bothers me. I wish they had told me what to do if I started puking my guts out repeatedly. I wish they had warned me more about just how severe a reaction you could have if you dehydrated. That said, I did respond to treatment on lithium, at least at first. A succession of anti-depressants were added later, and I wish I’d asked more questions about those too.

The doctor did insist on talk therapy also. This was a college environment, so cost was less of an issue, though it meant a different internist every year (and sometimes changes mid-year). This meant that the talk therapy varied wildly in how successful it was based on how much I trusted the individual. A few were excellent and taught me coping strategies I still use today.

About treatment/side effects –

I don’t know, as I’ve avoided meds for a while now. I think it would be nice if doctors gave you more choices for treatment. It always seems to rushed… one more chemical into the bloodstream as though it’s not a big deal. And I always feel like, perhaps because I’m a big guy, that I’m supposed to (or more accurately expected to) just grin and bear the side effects, even when they’re miserable. Also, I wish doctors understood just how devastating one more med can be financially, especially if it is new, even if it is covered by insurance. A $30/month med is $360 a year. And sometimes we’re on three or even four of them, with co-pays for the office visits too, which can be frequent.

What should you tell your doctor/shrink –

Well… everything. But I don’t and I don’t think I know anyone who does. First there’s not time. I had a therapist who was able to create the sort of no time pressure environment once, but I’ve never had a doctor or shrink do the same (with the possible exception of my very first diagnostic visit). I don’t always talk to my doctor about my suicidal ideation. I don’t ever talk to them about being a rape survivor. I don’t always talk about experiencing that sort of disembodied watching myself feeling I get. I talk about being depressed, but not what the experience of depression is like for me. Sometimes I think my doctor thinks I’m just sad. I don’t talk to them much about how I experience hypo-mania, though I do talk to them about mixed-states, because those scare me a lot.

I talk to my doctor about medications and side effects, and doctors have to work hard to get me on meds unless I’m actually beginning to get more actively suicidal. Catching myself veering off the road. Realizing I’m speeding toward the tree and need to stop. But I can never remember starting to veer off the road, or stepping on the gas pedal, and I’ve never had a doctor adequately describe what’s going on there. I took my meds very strictly for years, but had a melt-down related to the meds and had to go off everything for a while. The doctors haven’t convinced me to go back on for any length of time, though at least I’ve started taking a few medications for other conditions not related to the bi-polar. For a long time after I wouldn’t even take an aspirin.

What makes the relationship work –

Trust, though in today’s environment where you get to see the physician for all of five to ten minutes, I have no idea how they’ll achieve that. My last doctor when I was honest about some suicidal ideation I was experiencing strongly suggested that she might not let me leave. I haven’t trusted her enough to speak to her about my condition since and said what I had to to be allowed to leave.

Well, if they weren’t difficult questions, they weren’t be worth answering now would they :) Thank-you for your honesty in sharing your thoughts.

“I’ve never trusted any therapist or shrink enough to tell them everything, and I’ve had enough bad experiences with doctors when I have opened up more that I don’t really trust them enough for them to give me good treatment. I still don’t know how to resolve that.”

This is a common problem. I’ve experienced and it seems like every person with a mental illness has also experienced it. I truly believe we need to be honest, as you mention above it’s the key to good treatment, but actually doing that is so hard. Getting over bad experiences with doctors is really a whole book on its own.

I’m so sorry you’ve had such difficult times on medication. I feel for you. I had my hair fall out on several medications but I’ve never lost it completely.

I know that many people see their doctor for only a few minutes, but it doesn’t have to be that way. In Canada it’s not an issue (at least, not here with psychiatrists, GPs are different). But in the States I believe you can request a longer appointment. I used to do that with my psych in the US. Psychs may not offer it, but I would inquire about it. (GPs can do it too, if you ask.) I’ll see if I can get a doctor to weigh in on the subject and I’ll post the response.

I can see from your comment you feel like you’re in a sea of confusion when it comes to meds and diagnoses. I feel for you. I know it took me years to figure out what I now know. But one thing I can tell you for sure is that everyone is different. You may have lost your hair on lithium, but that might be so rare the doctor had never seen it before (I don’t know). And unfortunately doctors can’t anticipate what any of our reactions are going to be. I wish they could. They wish they could.

I think what you’re describing (not to put words in your mouth) is a feeling of betrayal and now mistrust from that betrayal. I’m so sorry. I have felt that way. I know that feeling. It’s so hard to get past.

The only thing I will say is that if you need meds in the future there are many options and there are many doctors who will treat you well. And now you are better equipped to ask the right questions and demand the answers you need. There is often years of suffering before the right med is found. And it’s no one’s fault. It’s just the state of what we medically understand at this point in history. What I’m saying is, there’s hope.

I wish I’d asked more questions during my diagnosis, as I was initially mis-diagnosed as having major depressive disorder with co-morbid borderline personality. This led to the wrong medications, and more time without adequate help for what I was going through. Once the doctors realised that I was experiencing mania and psychosis, I was re-diagnosed as having bipolar 1.
I wish that I had asked them what symptoms I was experiencing them that led to my dignosis. If I had asked them to specify, I may have been able to disagree or agree and generally clarify what I was experiencing in order to be correctly diagnosed.

I also wish that I had been more honest about my psychotic symptoms. I was afraid and ashamed that I’d been hearing voices and seeing things that other people couldn’t see. I didn’t want to be a “crazy person” so I didn’t tell my psychiatrist about them until much later. This prevented me from getting help and medication for psychosis. To anyone also feeling afraid, there is help out there for psychosis. You doctor is there to help you, not to judge you. Be as honest and open as you can. Hopefully you will have a doctor that you trust and feel safe opening up to. If you don’t, maybe you should consider seeing a new doctor whom you feel as though you can be honest and open with.

Further, once I was diagnosed, I wish that I had asked about the types of bipolar disorder, and for the doctor to explain which type I was. I found this out much later, and didn’t know that different types of bipolar vary in both symptoms and severity.

I also should have asked about the different types of treatment available, and what my rights were as an involuntary patient. Those rights are still unclear to me, although I have been an involuntary psychiatric patient many times. I am still unclear about my rights regarding the times that I was forcibly injected with medication and put into seclusion. But of course it’s hard to know that these rights will be relevant until you have experienced this. I also should have asked more about the side effects of various medications, such as shaking hands and tardive dyskinsia.

I think that patients should be highly involved in their own care. This includes knowing the specific type of disorder that they have, the medications available to them and their side effects, other forms of treatment, their rights if they are hospitalised either as a voluntary or involuntary patient, how to manage their symptoms and being allowed to access their medical history easily.

When I get a new medication or change the medication, I ask my doctor what it is that the medication is specifically treating (psychosis, mania, or depression) and how it treats those conditions (chemical interactions), and whether those medications interact safely with other medications, alcohol or drugs. We also talk about how long the medication takes before there is an effect, and the side effects, and if I feel uncomfortable with the side effects, we discuss changing medications again.

I try to tell my psychiatrist when I’m becoming dangerously unwell, such as hearing violent or disturbing voices that are hard to ignore, seeing things or feeling suicidal. But at times I don’t recognise how dangerous this can be, and get too scared or too paranoid to talk to my doctor. I do tell my partner, who I trust completely, and she helps me talk to my psychiatrist about what’s happening. I respond best to direct questions, such as “are you hearing voices? Are they violent? Do you feel suicidal?”. If I’m asked to explain what’s happening, I often get confused or scared, but if direct questions are asked, I find it easier to be honest and to elaborate: “Yes, the voices are saying… they want me to… etc”

It is most important for your doctor or psychiatrist to know the severity of your symptoms and your level of safety. If you feel unable to tell your doctor, you could try telling a person you trust, and they can come with you to see your doctor, or relay the information themselves.

A shocking number of people are misdiagnosed, I suspect because it’s so hard to properly diagnose an illness where the sick brain is the source of its own information. What the doctors ask and what we say is so critical, and especially at the beginning, when they don’t yet know you, it’s hard for them to interpret what you’re saying.

And one of the points I am emphasizing in the book is understanding your diagnosis. Exactly the way you said: what is the diagnosis, what criteria was used and how it fits. At some point we need to ask those questions but no one tells us we need to ask.

Your point about psychotic symptoms is also well-taken. You’re absolutely right that some symptoms are things people hide – like psychosis. People think it makes them “crazy.” People think there’s something wrong with them not understanding that it’s all part of an illness. But it’s hard to trust a doctor you just met with information that’s so personal and possibly disturbing. It’s a challenge for the clinician and the patient, I think, no matter what.

Your suggestions about understanding your rights as a voluntary/involuntary patient are also good but I’m at a bit of a loss as to how to address this as I suspect it varies widely across the US and Canada. And you’re right, no one thinks about it until they’re in that situation, which usually isn’t a time when you can ask good questions or understand the answers.

I agree severity of symptoms is key. Sometimes I feel like there’s a tickbox: depressed yes/no when we all know that means nothing. What matters is the severity. And the danger. The same goes for side effects.

Thank-you so much for taking the time to answer so many questions. It’s obvious that your experience as a patient has taught you a lot. I hope to spread some of that knowledge around so everyone doesn’t have to learn it the hard way.

My aproach to the information exchange between doctor and patient goes like this:
1. Do the research on the subjects I would like to know about.
2. Make an outline of the things I would like more information about from my doctor.
3. During my doctor visit I go through my outline the best that I can.
4. Repeat the process for the next visit.

By keeping to my outline of important topics, I get more answers to the questions that are most pressing each visit.

That sounds like a really good way of going about it, and writing things down is something I _hugely_ recommend. People underestimate the number of things they forget when they sit in front of a doctor.

And I agree, understanding priorities is important.

The relationship you describe is a pretty “advanced” one for some patients though.

I like the way you are planning to organize it. It will be more helpful if the reader can just jump to the section that applies to their current situation. Too often, we are left to dig through a lot of information in order to find what we need. Please advise when you are planning to publish.

the first thing I wish a psychiatrist had discussed with me was how I was going to feel after my major episode was over. Psychiatrists are so focused on getting you through your crisis periods that they don’t give much thought to telling you how to deal with the significant symptoms you have to deal with on an everyday basis. For me it took years to understand that I would have to deal with difficult symptoms pretty much all of the time, even with my medications working as well as they could. My meds keep me out of the hospital and from killing myself but bipolar is a challenge every day. No doctor told me I might face this until I started asking the specific questions.

That’s an interesting point. When do you think your doctor should have told you? What do you think they should have said?

I ask because of two things:

1. Telling someone about a lifetime’s suffering is kind of a downer. Not really something you want to do unless the person can psychologically deal with the information.
2. I’m not sure what the doctor would say as each person is an individual and the doctor can’t predict the symptoms that will remain for any one person. They can’t predict which symptoms will be helped and which ones won’t or for how long.

I’m not saying you’re wrong because obviously you feel like there’s a piece of information you needed but didn’t get. I’m just not sure what that piece is.

Is it just being told that it was possible all your symptoms wouldn’t disappear? The myth of complete remission?

I’m new to your site, and am looking forward to your book. I think it would be very helpful to include actual experiences. I was diagnosed as Bi-Polar about 30 years ago and have experienced a number incidents over the years (mostly major depressions). Although it’s been tough at times, I actually feel fortunate, as it could have been much worse. As you say, a key part is the openness and understanding available today.

My answers would depend on the state of my relationship with my doctor. In my mind there have been 3 states for my Doctor / Patient relationships. I think that openness and honesty are the key to making this work. Trust is something both parties have to earn over time. It would be good if the book could highlight the different levels of relationships – there are good reasons to limit sharing during a crisis situation. Learning should be encouraged as time progresses, the ultimate goal is where I (the patent) take primary responsibility for myself, but still know help is there if I need it.

First, “Compliance” (or blind trust), where I first met them in a crisis situation (such as an attempted suicide via overdose). In that case, the doctor needed to act on my behalf as I wasn’t even in a position to understand what was happening. I didn’t know what to ask my doctor at this time.

Second, “Awareness” (or building trust), where once I’m fairly stable an open and transparent discussion can begin. The biggest thing here was for me to become educated on what being Bi-Polar meant, the reason my specific meds were chosen, what I can expect to happen, side affects, and also things to avoid (such as mixing with alcohol). Knowing the side effects are key, especially the ones most likely to happen to you.

Third, “Commitment” (or earned trust), where I’ve reached a point where I can return back to work, and meetings are required less and less often. This is where I commit to follow our agreed upon plan and the Doctor trusts that I will contact them in the event anything happens.

Secondly, I think the way you’ve divided the relationship is quite reasonable. I agree with you that relationships evolve. It’s like seeing a dating profile online, to instant-messaging, to coffee, to quality alone time. Trust in the relationship grows over time.

I’m actually organizing it like: diagnosis, treatment, remission, which is similar to what you’ve described above. (Emergent situations is an excellent addition though.) I’m hoping this will allow people to get to the part of the book most relevant for them at that moment as I think being able to easily find just what you need to know is key in dealing with any population that might feel overwhelmed. Of course, the whole book is there, but it’s nice to be able to go right to what I want.